Facing the final frontier

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Cycle 1 Afatinib-cetuximab

Sneezing, coughing, gunfire, the furnace…the soundtrack of my life at the moment. Hubby’s sick, it’s only 50 degrees out yet we’re running the heater like it’s Denver (haha), the kitchen reeks of chicken soup, and it’s all I can do to keep from catching his bug.

Things have been in disarray for the past two weeks… longer than that if you count how incapacitated I was before treatment. Things were pretty rough. I didn’t have the energy to cook, clean, attend to administrative matters aside from what I needed to get to the clinical trial in Colorado. I wrote a long, somewhat bitter account of the first visit there, which I’m recounting in a toned-down but still irritated version.

Meeting with the charming, charismatic, brilliant D. Ross Camidge, MD, director of the thoracic oncology program, was nothing short of hopeful and reassuring. However, the clinical research coordinator/manager completely dropped the ball and didn’t schedule any screening tests to take place during the time I was there!! She suggested I return Feb. 1 for screening and again on Feb. 8 to start treatment. I suppressed the urge to strangle “Tinker Bell” and objected to the proposed schedule, which she presented ostensibly so I could arrange economical flights (How does that make sense?). Shortly after, Dr. Camidge entered the room and asked how soon I could be started, which I think helped my case. It came out that she’d taken a few days off…Peculiar that Dr. Camidge’s assistant also took off on two months leave and none of my emails or calls requesting an appointment were answered. I finally reached someone by accident – after two weeks of calls and emails. Asking if there was some way screening could be accomplished while I was there was met with a garbled, non-committal, administrative-oriented “maybe”. Of course nothing happened. The day we left, Tinker Bell somehow managed to schedule screening and the start of treatment over three days, Feb. 1 – 3. Still a mystery why there was a day between screening and treatment, as I’d heard others starting treatment right after screening. But whatever…(or what part of “Disease Progression” don’t you understand?)

As luck would have it, the first big snowstorm of the year hit on Thursday, Feb. 2. We spent the (extra) day wandering REI and driving out to a far-out suburb west of Denver to see HUGO in 3D. I received a call announcing the surprise news – I was now enrolled in the combination arm of the trial, rather than the sequential arm. I would receive cetuximab infusion at 7:30 the following morning.

The original trial was written as a single arm trial, with all participants receiving Afatinib (BIBW2992) and cetuximab (Erbitux) simultaneously. Back in December, I was told the protocol was amended to start new enrollees with sequential therapy, receiving Afatinib single agent until progression, at which time cetuximab would be added. There was nothing to be done – it was still the only good thing on the horizon for me. So the infusion was good news, if horrifically inconvenient. By the time we emerged from the theater, people had stripped the grocery stores clean and rushed gas stations in preparation for 12 – 20 inches of snow.

Turns out the streets aren’t plowed or salted quite as proactively as places which receive more snow (such as Buffalo and Minneapolis?). Hundreds of flights had been cancelled. At 6:30 a.m. on an expressway with 6 inches of snow, we spotted a white poodle (or maybe it was a cocker spaniel) wearing a plaid coat, in our lane, trying to cross the 3-lane highway. Hubs stopped traffic and rescued the crying little pooch. A woman in a blue Subaru stopped beside us, got out of the car, Hubs handed her the dog without explanation and off we went. Later that week he dreamed we kept the dog…there must be something Freudian in that.

Infusion went alright, after which I took my first Afatinib pill (40mg). I didn’t drool all over myself, although I did wake from the Benadryl stupor with a violent coughing fit. The other “surprise” infusion patient in the room beside me had a severe reaction which Hubs witnessed. I was deep in twilight land, hearing the man cough but unable to lift an eyelid. After infusion we saw him laying down in a private room.

Of course our flight was cancelled. The nurses predicted we wouldn’t get out of Denver that night, but we were determined. We arrived at the airport at 2pm for what would’ve been our 3:20 flight. We managed to find a 7:30, which was delayed to 9:25 pm. 7-1/2 hours with an excruciating headache, all-over body pains, and chills plus 2-3/4 hours in the air = two days in bed. Hubs bought TV dinners and we managed with that for Superbowl weekend (which we didn’t watch).

Wednesday the 8th was the 3rd Denver trip – a toxicity check. Up at 4, flight at 6, cab to hospital, just to spend 1-1/4 hours for labs, EKG, and to show the nurse practitioner the beginnings of a “rash”. Flight delayed an hour, home to find Hubs with a horrific head cold.

Next Wednesday, 15th…infusion #2. It’s supposed to snow the day before. The following week is another turnaround toxicity check, then the 29th begins Course (or Cycle) 2. After this 6-in-a-row ordeal, the schedule slows to every two weeks for infusion. A couple of folks on a forum I participate in had progression at the 4-month mark, and I’ve heard about the severe side effects. The advice is to lubricate like crazy, wear gloves, take antibiotics for the rash, suck it up and enjoy breathing.

Seven days in, I’m off the edge. I definitely feel better. Still a bit of a cough and some shortness of breath, but on the whole, closer to normal than I’ve been for a long time. Appetite is vastly improved, pain levels decreasing. Something is working, even as I feel my body drying up.

Crossing fingers for continued improvement with manageable side effects.

Sorry for the lack of replies to the last round of comments. I hope you’re feeling better – it’s probably impossible to keep from catching every bug, esp. with kids and there at work.

We tossed the idea of getting a temporary place in Denver, at least for the 6-week stretch, but then I’d be there completely alone, without transportation unless I rent a car for a month, and the Hubs travels so much, the house in Alameda would be haunted by lonely, angry Siamese cats…I couldn’t really enjoy the mountains as I’m still not at 100% oxygen and they’re about an hour away, I’d have to eat out continuously…the practicality of it slipped away as each trip passed.

The overriding thing is this – once I get to Denver, all I want to do is get treatment over with and get home – whatever it takes. Part of it is warmth. I just can’t take the cold right now. The rest of it is familiarity, topography, comfort (of course). There are very cute neighborhoods there where I know I could thrive. Once I feel better and get back outside, I’m sure I’ll be able to enjoy it more. But for now, there are three more weekly trips and then it’s every two weeks. So, one trip at a time…